Category: 10 Things I Wish They’d Told Me

Your personality can change dramatically… like mine did after my mTBI in 2004. I went from being a positive, pro-active individual with an indomitable spirit, to an anxious and easily upset “hothouse flower” who flew into a rage over every little thing. I went from being attentive to everything others needed from me, and going out of my way to ensure they were protected and well-cared-for, to being selfish, self-centered, and oblivious to what other people wanted and needed.

Granted, there were other mitigating factors that came into play, but the difference between pre-TBI and post-TBI was remarkable.

I can say that now with some measure of calm, because after 12 years of really working on my recovery, I’ve made huge strides and am better off — all across the board — than I can ever remember being.

But back in the day, my recovery wasn’t a foregone conclusion. It was questionable, in fact.

The thing that made the difference for me was not giving up. Having help, in the form of a neuropsych who would just talk me through my week, every week, and let me sort things out. They would question me, when I was on the verge of going off the rails, helping me sort through the mass of details to find a common thread that I could hang onto. For just one more day.

Just one more day.

And over the years, one more day led to another and another and another, and those days became weeks and months and years… till I stopped to catch my breath and look around. And I realized I had come through on the other side.

Everybody’s trajectory is different, of course. And along the way, we need to adjust. I had to let go of some dreams I’d had for such a long time. I had to let go of progress I’d made before my accident. I had to settle into a different life path. And I had to make peace with my losses. But that all led me to the light in the distance. And in the end, will not having every single dream come true make me less happy, less productive, less capable?

The thing is, if I’d listened to the experts, early on, I probably wouldn’t have gotten here. I was told:

I was exaggerating my issues. I wasn’t. If anything, I was understating them.

Getting hit on the head wasn’t a big deal. NO, it was a big problem. It nearly cost me everything I’d worked so hard for.

My brain would just recover on its own. It didn’t. I had to work with it constantly to get it to a place I was happy with. It took years to do that.

TBI recovery doesn’t happen. Obviously untrue. It did happen.

These are just a few of the things I either read or was told. And I didn’t buy any of it. I knew I was in trouble, and I did everything in my power to fight for what I needed. What my brain needed. What my spouse and the life I’d built up all needed.

So, let’s rethink brain injury, shall we? Yes, it’s serious. Yes, it takes a toll. But the damage is not irreversible, and it can be followed by incredibly recovery.

2. Since your old habits don’t quite work well enough, you need to TAKE CONTROL of your brain and get it to think through the things you are going to do.

Your BRAIN no longer does its job well enough on automatic pilot.

You may think it does, but it doesn’t. All those years your brain invested in learning how to do things… well, the things it learned about “the right way to do things” has changed. The connections and pathways that your brain was used to using to get from Point A to Point B… well, those old highways and byways may have been “washed out” by your TBI, so all the signals traveling through your brain need to find new ways to do their job.

Now, your MIND has to make sure it does its job properly, whenever you do anything in which the results are important.

You can’t just rely on your brain to be on autopilot. You have to use your MIND. And you have to stay engaged. You have to pay attention. The brain can do its job, but it needs to be watched — cared for — tended. And that’s the job of your mind.

Any time you need your actions or your words to have quality, your mind has to make sure that your brain produces quality at every step.

Your mind is in your control. Your brain … well, not so much. Some people make no distinction between brain and mind, but for our purposes here (and for Give Back purposes), we need to make that distinction. The brain is the organ, the result of a whole lot of physical and neurological processes. The mind is the result of the brain’s activity and your presence… of mind.

It’s as if your mind now has to be the boss.

Yep. It does. It has to run the show. You can’t rely “mindlessly” on your brain to just do its job as usual. Because the ways that it used to do things have altered. And that change is permanent. Does that mean you can’t create new ways and pathways for your brain to do things differently? NO. That’s the point — it can change and learn and grow. But it’s used to doing things the same-old-same-old, and that’s not going to work for you anymore.

You need to be MINDFUL so that you can be an effective boss.

Give yourself a promotion. Make yourself the CEO of your own life. You’ve got to run things, now. Not just your autopilot brain, but your powerful mind, which learns and grows and changes constantly and acquires skill over time. Mindfulness, paying attention, properly managing your energy and frustrations… you’ve got a new job.

How big is the problem?

In 2013,1 about 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States.

TBI contributed to the deaths of nearly 50,000 people.

TBI was a diagnosis in more than 282,000 hospitalizations and 2.5 million ED visits. These consisted of TBI alone or TBI in combination with other injuries.

Over the span of six years (2007–2013), while rates of TBI-related ED visits increased by 47%, hospitalization rates decreased by 2.5% and death rates decreased by 5%.

In 2012, an estimated 329,290 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.3

From 2001 to 2012, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, more than doubled among children (age 19 or younger).3

What are the leading causes of TBI?

In 2013,1 falls were the leading cause of TBI. Falls accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States. Falls disproportionately affect the youngest and oldest age groups:

More than half (54%) of TBI-related ED visits hospitalizations, and deaths among children 0 to 14 years were caused by falls.

Being struck by or against an object was the second leading cause of TBI, accounting for about 15% of TBI-related ED visits, hospitalizations, and deaths in the United States in 2013.

Over 1 in 5 (22%) TBI-related ED visits, hospitalizations, and deaths in children less than 15 years of age were caused by being struck by or against an object.

Among all age groups, motor vehicle crashes were the third overall leading cause of TBI-related ED visits, hospitalizations, and deaths (14%). When looking at just TBI-related deaths, motor vehicle crashes were the third leading cause (19%) in 2013.

Intentional self-harm was the second leading cause of TBI-related deaths (33%) in 2013.

That, to me, is a pretty big deal. And that’s not even counting the costs of concussion to all the people who sustain them, as well as the friends, family members, co-workers, and employers involved.

While other diseases, injuries, conditions, etc. have “epidemic” status and get a whole lot of attention and visibility drawn to them, concussion / TBI still lurks just under the surface. Maybe because it’s so scary for people. Maybe because it’s so invisible. Maybe because people still have this perception of TBI as being “just a clunk on the head” that’s no big deal.

Guess what — it is a big deal. And it affects your whole person.

So, maybe people really do get that. They just don’t have the ways of thinking/taking about it in a productive way.

Maybe we just aren’t properly equipped.

I’m not sure there’s ever a way to properly equip people to confront their deepest, darkest fears. But the right information goes a long way.

Also, having standards of care, getting the word out on a regular basis about how to understand and handle concussion / TBI, and not treating it like a taboo that can’t be discussed in polite company… that would help, too. Heck, if we could just discuss it, period, that would be a positive development.

Well, that’s what this blog is about. Sharing information, as well as discussing what it’s like from a personal point of view. It’s important. And it doesn’t happen that often, in a productive and pro-active way. At least, not compared to the frequency with which it happens.

It never ceases to amaze me, how little is generally known about concussion / mild TBI. Either it’s dismissed, or it’s viewed with a combination of fear and horror. Just mentioning to someone that you’ve had one (or two, or — like me — 9) can seriously alter their perception of you.

I’ve had conversations with people who I thought would “get it”. But as soon as I mentioned my history of mild TBI, their manner changed from collegial to guarded. As though they were waiting for me to slip up or do something stupid.

Eh, well. Whatever. I can’t get too bent out of shape about it. After all, it’s largely not their fault. We just don’t have a lot of good information about concussion / mild TBI. Nor do we have stellar management practices. It’s either negligent, or it’s over-protective. And unless I’ve been under my rock too long (always a chance of that), I don’t believe there are widely recognized, standardized best practices for docs and patients, alike.

We’re getting there. But we’re not there yet.

That being said, I’m working on updating my series 10 Things I Wish Someone Told Me After My Concussion(s) I collected 10 posts in one place, and I also published it as an eBook, to give people more access to it. But looking at it last night, when I had some time to myself, I see I really need to both expand it, as well as create a more condensed, high-level version of it.

The point of the collection is to let people know they’re not alone – and to share with them things that really would have helped me, had I known about them sooner. When you hit your head hard enough to alter your consciousness, it can impact you heavily. It might not be obvious from the outside right away, and it may take a few hours or days or weeks (sometimes even months) for things to start to get weird, but something actually has changed inside your skull.

We need to know this. Not just from doctors when we think to consult with them. Not just from experts, who have all the domain expertise. But in the general population. That’s why I’m expanding the book into print — because I want to get it out to libraries, as well as to individuals. It’ll be on Amazon, just like the eBook is.

I’ll be updating this site, too, as I go along, adding more information to help clarify. This is important. People need to know. It can’t protect them from that first impact, but it might just help them deal with that — and possibly avoid the next impact that becomes even more likely when you’re already concussed.

Have you had a concussion? A mild TBI? If you’ve recently had a head injury, you’re not alone. Millions of Americans have a brain injury every year. Sports, falls, assaults, auto accidents, and more all contribute. To take care of yourself and get better, there’s a lot you need to know.

What can you expect? Why do you feel so weird? Why are you getting so angry? How do you take care of yourself? How long will it take for your symptoms to clear up? Will this fatigue ever end?

This “beginner’s guide to concussion” gives you an insider’s view of what it’s like, what you can expect, what you might experience, and why you feel the way you do. Written by a multiple mild TBI survivor with decades of recovery experience, “10 Things I Wish They’d Told Me After My Concussion(s)” fills in the blanks of this puzzling condition and talks about anger, fatigue, frustration, the neurological basis of your situation, and more. There is always more to learn with concussion. And this book is a place to start.

10. Plenty of other people have had mild traumatic brain injuries (concussions), and most of them are getting on with their lives.

It’s not the end. It may feel like it, but it’s not

Brain injury / concussion is extremely common – millions of people in the US experience once each year, and many more experience them globally.

Getting clunked on the head is something as old as the hills. If it were catastrophic every single time, the human race would not have survived. So take courage – you’re in good company.

While brain injury recovery can be time-consuming and there are no hard-and-fast guarantees, rest assured that many people have bounced back after concussion and gone on to live productive, satisfying, fulfilling lives. Those who haven’t had such an easy time are in the minority. And while I am a member of that minority, I can tell you that even the long, hard road has had many blessings along the way.

You may notice some changes in your personality and abilities, but some of the changes may be for the better. I know that in my case, overcoming all the difficulties of symptoms and blocks that were put in my way trained me to persevere and be diligent – and also to pay attention to important signals that I was screwing up again and needed to make a course correction.

Nobody wants to injure their brain. But when it happens, there’s a lot of useful lessons to be learned. And those who learn and adapt, are the ones with the highest success rate.

You can be one of the successes. No doubt about it!

What to do?

Be patient.

Pay attention.

Be the best person you can.

Put forth your best effort and learn from all your mistakes.

And remember: This is not the end.

Did you know there’s a Kindle eBook version of this post? It’s expanded, along with the other posts in this “Top 10” segment.

9. You may feel like this for a while.

It feels like no one understands… and heck if you can describe it to them

Yep, it’s unpleasant. Yep, it can suck. And yep, it can take a while to get all figured out.

It’s practically impossible to explain to others what it feels like to have post-concussive symptoms, and it can be almost as impossible to convince other people that concussion / TBI is a thing. Heck, I have long-time friends and family who still refuse to believe I have any issues – and I’m not the only TBI survivor who has that experience.

Never mind that. Just take care of yourself and pay attention to your own recovery.

And don’t lose hope. I had just about given up of ever feeling normal again, when suddenly I felt like my old self again.

It brought me to tears.

It was amazing.

And it comes and goes.

The thing to remember is that, through the course of life, we never ever stay the same person. We are constantly changing, constantly growing, and expecting ourselves to stay the way we were “before” isn’t realistic.

It was never going to happen, anyway. Even if you hadn’t gotten injured, life would have changed you in some way. You would have lost or gained many, many things (and people) along the way, and those experiences would have changed you, too.

Just be aware, that brain injury / concussion isn’t the kind of thing you can rush. The brain will take its own sweet time.

So, buckle up for the ride of your life!

What to do?

The best thing you can do is be patient with yourself and be aware of the ways that you are not functioning as well as you would like. Make a note. Try again. And keep learning.

Don’t rush it. These things take time. Eat healthy food, stay away from a lot of junk food, sugar, caffeine, and stress, drink plenty of water, and get lots of good sleep.

Exercise can also help a great deal. It reduces stress, and it gets your mind off your brain for a while. The times I’ve felt best, are the times I’ve been exercising regularly – even light exercise for 10 minutes at the start of each day. Just don’t overdo it. Recovering from an injured brain is hassle enough, without adding an injured body to it.

Did you know there’s a Kindle eBook version of this post? It’s expanded, along with the other posts in this “Top 10” segment.

8. You might feel like you are crazy… like you’re losing your mind.

Auuuuggghhhh!

This is another very common complaint after concussion / TBI. Your brain is working differently than before. Maybe you’re saying and doing things that don’t make sense to you – and others around you. Maybe you can’t find the right words. Maybe your body is super-sensitive to every little stimulus. And you certainly don’t feel like your old self.

Believe me, this is common. Thousands upon thousands of people with concussion / TBI feel like they’re losing their minds. Some feel that way longer than others, but for the vast majority, they get back to feeling normal before too long.

That’s how it was for me for many years. I’d get hit on the head, be dazed and confused for some time… then eventually I’d be back to feeling like myself. This last time, it took me 10 years to start feeling like myself again. But at least I’m back. For the most part.

Some days, I still feel like a stranger. And I don’t know what happened to the old me I used to know so well.

Yes, it can make you feel crazy.

But you’re not crazy. Your brain is just “recalibrating” and figuring out how to do the things it used to do so easily.

It’s not a small thing, however. This complicates life in so many ways – including your interactions with others. One way it is particularly troublesome, is with doctors. If you have trouble expressing yourself and words aren’t coming out properly, it can be hard, if not impossible, to get good medical help. In my case, I was so “all over the map” that one neurologist after another treated me like I was mentally ill and just looking for attention and pills. Needless to say, it made it hard to get help. But I stuck with it, and my persistence paid off.

Unfortunately, not everyone is as fortunate as I have been.

The important thing to remember – no matter what doctors or friends or family members say – is that the source of your troubles is your brain. It’s not something you’re making up. It’s real. And you need to reckon with it.

Remember that neighborhood I talked about earlier? The one that got hit with the microburst?

Think about all the wiring in that neighborhood immediately after the storm. At first it’s down, then it comes up, little by little. Eventually people can turn on their lights without a brownout. And they can watch t.v., although it takes a while for them to get their heads on straight, after working around the clock to clean up their street.

That’s what’s going on in your system. You’ve got the t.v. on, but you keep hitting the wrong buttons on the remote, and the shows keep jumping around on your mental screen. It’s just the recalibration process running its course, and until things get sorted, you’re going to feel a little crazy.

But you’re not going nuts. It just feels that way.

What to do?

Be patient with yourself. Your brain needs time to figure things out again.

Have a sense of humor. Seriously – some of the stuff you do is pretty funny, if you think about it. If your system is going to go haywire for a while, you might as well have fun with it. It’s not the end of the world. Plus, you’ll have a hell of a story to tell, on down the line.

Did you know there’s a Kindle eBook version of this post? It’s expanded, along with the other posts in this “Top 10” segment.

7. Being tired makes you cranky. It also can make you more emotional than usual.

Cranky after concussion? You’re not the only one

You may find yourself behaving in “strange” ways, or thinking “strange” things. You may also find yourself getting much angrier than before — and much more quickly than before.

A tired brain isn’t just a distractable brain – it’s an irritable brain, as well. Fatigue can cause an injured brain to overreact – to everything. It can give you a hair-trigger temper and make you unpredictable and volatile.

That’s not good for anyone.

I wish I’d known this from the start. It would have saved me so many years of real pain over watching myself blow up over nothing… at times becoming a danger to myself and the people around me.

I blew up with family, friends, co-workers, bosses, healthcare professionals, and yes, police officers. I lost jobs and relationships because of this.

It was so debilitating to watch myself go ballistic over things like dropping a spoon on the kitchen floor, or not being able to understand what people were saying to me. If I had known what fatigue does to my brain – because of my injuries – I would have worried less about being a bad person, and worried more about getting to bed at a decent hour.

What to do?

Pay attention to how tired you are. And pay attention to when you have a bad day – or a bad incident. Notice any connection?

Earlier tends to be better for a lot of us

To combat this problem, you can schedule important things for the morning, when you are still fresh. And you can postpone (or avoid) doing social things when you are tired.

Important activities where you need to keep your cool need to happen when you’re not fatigued. And that means doing important things earlier in the week, too.

By Friday, no matter how early it is in the morning, you may still be tired enough to fly off the handle over nothing at all.

There are medications that can help with the exhaustion that comes with TBI. Some meds will help you think better, so you get less tired, period.

If you want to go “med-less” (that’s what I prefer), you can always have a cup of coffee before an important event. But you have to watch out that it’s not too late in the day, or it may keep you from getting to sleep. A cup of coffee at 3:45 p.m. may help for that Thursday-afternoon meeting, but it may put the screws to your Friday.

Did you know there’s a Kindle eBook version of this post? It’s expanded, along with the other posts in this “Top 10” segment.

6. All of this is going to make you feel very, very tired.

TBI / concussion symptoms can drain you.

The sleep thing again…

I’m repeating myself, because it’s that important.

Fatigue is one of the top complaints of people who have sustained a brain injury. For some, it resolves in a matter of weeks or months, for others (myself included), it goes on for years. Giving yourself a chance to heal up front is probably a good idea.

TBI / concussion can make you feel wiped out.

When your brain is going haywire and it’s sending strange messages to your body, and your body is hyper-sensitive to just about everything… it’s exhausting. I spent years in a near-constant state of exhaustion. I had maybe a few good hours in the morning, then I was done.

Especially at the start, when your brain is figuring everything out – it feels like for the first time – you can end up feeling fried before you get half-way through the day. I drank way too much coffee for years, just to keep going. I didn’t understand what the problem was. I just knew I was exhausted, and I had to keep going.

You may need to sleep more than usual. If you can get it – take the opportunity. I functioned for years on exhaustion, because I had no choice. I had no access to public benefits, and if I didn’t work, I didn’t eat or have a home. So, I worked. Through the exhaustion. It was no fun at all – for me, or for my loved ones. We all paid a steep price for my fatigue.

What to do?

Sleep is precious. It helps your brain clear out the gunk that gets released when it gets injured, and it restores your sanity. Get as much sleep as you can, whenever you can.

You may feel like a loser for needing so much sleep, and/or others might call you a “slacker”, but they don’t live with your brain. You do. Give it a break. Give yourself a chance to feel human again.

Also, consider cutting back on all the stuff you think you need to do.

A lot of us stay busy, just because everyone else does it, or it makes us feel more productive and needed. In the end, you might be productive and needed, but you still feel like death-warmed-over. It’s up to you, but I’ve found that cutting back on all my customary activities was a magical relief.

All the “friends” I used to have? They’re still running on their hamster wheels. And they’re no happier now, than when I departed from their midst.

Did you know there’s a Kindle eBook version of this post? It’s expanded, along with the other posts in this “Top 10” segment.